Monday, July 29, 2013

This & That

This coming Thursday we will be at Texas Children's with Andrew for outpatient sedated Botox injections. As always, we'd love your prayers for a safe and successful procedure since there will be some anesthesia. He will be getting the shots in the back of his left calf again as well as down the front of his shin since the spasticity has caused his leg to turn inward. Three weeks later we will go back and begin serial casting for 6-8 weeks. I'm sad that he'll start school in a giant leg cast :-( but I'm thankful we were able to be cast free over the summer.

The ultimate goal here is to improve his gait and function and to hopefully push impending orthopedic procedures out into the future as far as possible. My hope is that he will be alleviated from some of the pain and cramps that the spasticity causes and that maybe he will get enough improvement to master riding a inline scooter, which has been very challenging for him and perhaps even learn to ride a bike without training wheels. He wants to do those things really badly but they are extremely difficult for him with his balance and reciprocal movement issues. And running without so much falling would be really wonderful too.

After the casting is done he will be fitted with new leg braces and a night splint and will begin intense physical therapy to maximize the effectiveness of the Botox. Hopefully it will all be worth it in Andrew's eyes, he's getting old enough now that I want him to understand why we have to do this and I'm praying he'll be pleased with the result of all his hard work. But I certainly would love for him not to need any of it. He's such a trooper!

I can't believe my little guys will start 1st grade in less than a month. After lots of discussion with teachers and therapists we've decided to start them in public school this year with their same age peers and not repeat kindergarten. I've wrestled with this a lot, if they weren't December birthdays and were born in 2007 like they should have been it would be a much easier decision to hold them back. They are already in the older half of their grade so it seems like holding them back doesn't make sense at this point in time as they seem to be grasping the material just fine but we are struggling with fine motor and attention issues but not enough that they need to repeat a grade at this point. But we will certainly reevaluate at the end of 1st grade.

When we have been home this summer, we've kept a very full schedule trying to get the most out of our time. Both boys have some degree of fine motor delay so they've been getting occupational therapy twice a week and they attended an art camp, a church day camp and had a few handwriting sessions to help their development along. Andrew has turned into a coloring machine and he's gotten pretty good at coloring pages with markers and I'm hoping that has helped his hand strength.

In addition to helping along our fine motor skills we've been doing a lot of martial arts to help with balance, flexibility and gross motor. When we are in town, they've been doing taekwondo 2 days a week as well as judo 2 days a week. Judo is by far their favorite, it involves a lot of grappling and physical contact which has been a good outlet for them in that regard.

Now for some random pictures:

Summer rain in Texas! So excited to get to use an umbrella one day leaving day camp

Reenacting a picture of themselves that hangs in the pedi's waiting room lol

Ally's favorite snack "Pop Pop"

The Adorable doll cradle she got from Aunt Dana for her birthday. She loves to get in it ;-)

She loves books!

Taking "Dooog" Zoey for a walk

Andrew is one cool dude

Saturday, July 27, 2013

Daddy came to CO!

The boys have been asking daddy to come to Colorado with them in the summer but it's been several years since he'd made it since his work has always been busy in the summers and he'd changed jobs at one point.

Thank you Kenny for coming, it meant so much to us!

We all had a great time having him there. We took the boys rafting for the first time. And they loved it, especially Adam who kept jumping in the freezing water to swim. He also paddled most of the trip and stood on the front of the raft trying to balance until the guide spun him off. He's getting to be more of a daredevil lately!

Adam lost his second tooth too! Getting so big!

Tuesday, July 23, 2013

Matter over mind?

I mentioned before how much we like to go hiking while in Colorado well it would only be fair to also mention the bad with the good. The last hike we went on will definitely not be one of my fonder memories from our trip.

It ended up being much harder and steeper than I was planning. Plus Andrew had woken up on the wrong side of the bed and he decided he couldn't/wouldn't before we even reached the trailhead. It was just plain hard, he started out with less than a good attitude and sometimes I just don't know when to push and when to just comfort him and let him be.

I know it was hard and scary for him. He felt unbalanced and tired very quickly. I really struggle with not wanting him to feel like he "can't" do something or for him to quit before he even starts but I don't want to be unreasonable. I felt really really conflicted but we pushed on for a ways hoping it would smooth out like the trail guide said and that Andrew would push through. But it was just too much so we made an executive decision to turn the group around.

Much to my surprise, after kicking and screaming the whole way up Andrew gleefully trotted down the slope back toward the car like it wasn't even a big deal, I guess his motivation to get off that mountain was really intense. His whole attitude was different and he finally started listening to Pa's advice on where to step and learned to go down with his feet at an angle and had a much easier time. I actually thought it was much harder going down, maybe it was the baby on my back and worrying about slipping on the loose rocks. The car was a welcome sight and we left and went to the park where we had a nice time playing and enjoying our picnic lunch.

Moments like these are just not my favorite as a mom. Was I asking too much of him? Or was I letting him manipulate me with his emotions? Am I the worst mom ever? I still don't know but we definitely won't be trying that trail again anytime soon. Where can I find short/mild trail recommendations for kids with stamina and balance challenges? I'm sad that physical things may always be harder for Andrew, I try really hard to find activities that include all of us but it's getting harder with same agee boys that are on such different pages with their interests and abilities. Why can't life be more clear cut? Where did I put my mothering manual ;-)?!

Of course it's not lost on me what a blessing from God to even be having this conversation. I scarcely believed that hiking a mountain trail would ever be a possibility 6 years ago. But in the same breath it would be a disservice to both kids to stop there and declare the race over years ago. It would be wrong not to expect and hope and pray that they would smash through each new boundary, always growing, never giving up.

I wish this had been a better experience for everyone but sometimes it just doesn't go how we plan. Andrew, I'm sorry if I pushed you too hard to do something you really didn't want to do but I'm proud of you for finishing strong. Hopefully you won't be too scarred for life ;-)

At least there was some good scenery

Lovely group photo with the grandparents. Andrew was too mad to look up at me, poor guy !

Adam and Granny having a fun. Which way do we go?

The mind of man plans his way, But the Lord directs his steps.
Proverbs 16:9

Wednesday, July 10, 2013

Fourth of July Fun

This is a giant photo post from all our 4th of July celebrations. We had a really great time celebrating America!

The kids all had cute patriotic clothes so we took some pictures before church on Sunday morning.  Granny got Ally and Logan matching smocked outfits this year.



Sweet Baby Cousins



Love all these cute kids!


Adam & Ally, So Sweet!



Andrew was not too thrilled about the patriotic tie Aunt Dana ordered for him off etsy ;-)


Can't you just feel the love from Andrew? ;-)


He was a little more tolerant of it after church


My handsome boys!



Precious Girl!


Lunch after church on a patio with some gorgeous flowers




Sweetest moments between Andrew & Ally!










Is she too cute or what? LOL What a mess!




Can you tell Ally likes Anne Michal?







My poor little baby is having a hard time with her balance these days as she's trying to go everywhere as fast as she can. She stumbled into the corner of a coffee table and cut her eye lid. It was so sad, I can't stand to see her hurt =-(  Her eyelid swelled way up and she has a terrible shiner now.




We made a quick trip to the ER to get checked out and have the cut glued to help it heal up. She was such a trooper and was all grins with Granny.




My Patriotic Little Pixie






Her "good" side



Looks like she had some fancy eye makeup on




Ready for the Kids Carnival












The kids loved the amazing fireworks show despite how freezing cold we were that night. Ally enjoyed it too but she fell asleep soon after it started.





Andrew was snuggled up in Anne Michal's lap the whole time



This is an aerial photo of the spectacular show taken by the Vail Daily



Headed to Vail for the America Days Parade












Playtime at Pirate Ship Park






Walking the plank


 

Poor Ally, we got all kinds of stares and comments all day from curious strangers. Her poor little eye can't heal fast enough. 


I'm so thankful for all the brave men and women that have fought to protect our independence and freedom and I thank God that I have the privilege of living and raising my family here in the USA.